Self‐management challenges and support needs among kidney transplant recipients: A qualitative study

Been-Dahmen, Janet; Grijpma, Jan Willem; Ista, Erwin; Dwarswaard, Jolanda; Maasdam, Louise; Weimar, Willem; Staa, AnneLoes van; Massey, Emma K.

doi:10.1111/jan.13730

Cited by 60 publications

(104 citation statements)

References 48 publications

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“…This research has shown that some patients do not wish to talk about their feelings for fear of appearing ungrateful or weak, making it difficult for HCPs to understand, assess and procure appropriate support 37. Even when patients do want to talk about their feelings, there is ‘no one size fits all’ solution to the provision of support 38. Different patients have different emotional needs indicating that any support offered to patients should be individualised in order to meet this variance of need 39…”

Section: Discussionmentioning

confidence: 99%

‘You have got a foreign body in there’: renal transplantation, unexpected mild-to-moderate distress and patients’ support needs: a qualitative study

et al. 2020

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ObjectiveTo explore why transplant patients experience unexpected mild-to-moderate distress and what support they may need.DesignQualitative study using individual in-depth interviews.SettingFour National Health Service (NHS) Trusts in the Midlands, UK.ParticipantsFifteen renal transplant patients meeting the criteria for mild-to-moderate distress from their responses to emotion thermometers.Main outcome measuresIdentification of the reasons for distress and support options acceptable to renal transplant patients.ResultsThree themes were interpreted from the data: ‘I am living with a “foreign body” inside me’, ‘why am I distressed?’ and ‘different patients want different support’. Following their transplant, participants felt that they should be happy and content, but this was often not the case. They described a range of feelings about their transplant, such as uncertainty about the lifespan of their new kidney, fear of transplant failure or fear of the donor having health conditions that may transfer to them. A few experienced survivors’ guilt when others they had met at the dialysis unit had not received a transplant or because someone had died to enable them to receive the transplant. No longer having regular contact with the renal unit made participants feel isolated. Some participants did not initially attribute the source of their distress to their transplant. Participants’ preferred support for their distress and their preferences about who should deliver it varied from peer support to seeing a psychologist.ConclusionsRaising the issue of post-transplant mild-to-moderate distress with patients and encouraging them to think about and plan coping strategies pretransplant may prove beneficial for the patient and healthcare provider. Patients should be able to choose from a variety of support options.

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Section: Discussionmentioning

confidence: 99%

‘You have got a foreign body in there’: renal transplantation, unexpected mild-to-moderate distress and patients’ support needs: a qualitative study

et al. 2020

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“…Renal transplantation is the gold standard treatment option in these patients, even though renal function support with external interventions (hemodialysis and peritoneal dialysis) can be provided (1). Renal transplantation has many difficulties before, during and after the operation, but it is an ultimate step in the treatment of ESRD (2). Informing renal transplant patients about the difficulties they may face in this process and providing them with realistic expectations may make it easier for them to accept changes in life-style and could increase treatment compliance and success (3).…”

Section: Introductionmentioning

confidence: 99%

Assessment of Knowledge, Perception About Transplantation and Life Changes in Renal Transplant Patients

Bozkurt¹

2020

BMB

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The objective of the study was to determine subjective factors such as adherence to treatment, knowledge levels, individual perceptions and lifestyle changes with a view to determine variables that could be useful for future processes in patients undergoing kidney transplant. Method: The study was conducted in the Nephrology Department of Gaziosmanpaşa Hospital, between January 2019 and November 2019. Fifty people aged between 18-70 years who had undergone renal transplantation at least 3 months ago and were treated as outpatients by applying to the nephrology clinic were evaluated. A semi-structured questionnaire including questions about their knowledge regarding transplantation, lifestyle changes in the transplantation process and personal perceptions was administered to the patients. Results: All patients expressed satisfaction with every step of the transplantation process. 32% of the patients were uncomfortable with medication and hospital visits and 44% were happy that dialysis was not in their life. 86% of the patients who underwent kidney transplantation reported increased quality of life after the operation and 36.7% stated that their sexual life changed positively. It was found that those who adhered to treatment mostly interrupted the use of medication (24%), and the sexual life of men and also patients with children were significantly affected more positively by transplantation. Those who did not receive adequate information before treatment had significantly more problems with adherence to treatment. Conclusion: It was found that the quality of life of the patients improved significantly after kidney transplantation. Men's sexuality was affected more positively by transplantation. By endeavoring to improve patients' knowledge and perceptions prior to kidney transplantation, patient satisfaction and adherence to treatment can be significantly improved.

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“…It increases survival and quality of life, while being more cost‐effective compared with dialysis (Tonelli et al ; Neovius et al ; Ferguson et al ; Rosselli et al ). However, transplantation brings new challenges into patients’ lives in terms of life‐long medication, care of the graft and various restrictions in everyday life (Nevins et al ; Denhaerynck et al ; Jamieson et al ; Been‐Dahmen et al ), and this is challenging for patients (De Pasquale et al ).…”

Section: Introductionmentioning

confidence: 99%

Implementing a tailored education programme: renal transplant recipients’ experiences

Andersen¹,

Wahl

Engebretsen

et al. 2019

Journal of Renal Care

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2019). Implementing a tailored education programme: renal transplant recipients' experiences. Journal of Renal Care XX(XX),1-9. S U M M A R YBackground: Patient-centred education is a key element in the care of patients undergoing kidney transplantation. We implemented a tailored, evidence-based education programme for the post-transplant phase. Objective: The aim of the study was to explore renal transplant recipients' experiences of participating in a new, tailored, evidence-based education programme. Methods: An explorative qualitative design was chosen to elicit knowledge, insight and understanding of the renal transplant recipients' perspectives. Twelve renal transplant recipients participated in semi-structured interviews about eight weeks post-transplant. The interviews were audiotaped and analysed using thematic data analysis inspired by Kvale and Brinkmann's method for meaning condensation. Findings: Two main themes emerged: 'Situated tailoring to the person's everyday life knowledge', and 'Tailoring as a standard procedure regardless of the person'. Conclusion:The findings of the present study indicate that the renal transplant recipients experienced the new education programme to be tailored to individual needs. Our study also revealed that the recipients experienced the health care personnel to take different considerations into account when educating. Viewing knowledge as continuously changing from controlled study contexts into clinical settings, we here demonstrate the need to evaluate new knowledge also after being implemented.

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Self‐management challenges and support needs among kidney transplant recipients: A qualitative study

Cited by 60 publications

References 48 publications

‘You have got a foreign body in there’: renal transplantation, unexpected mild-to-moderate distress and patients’ support needs: a qualitative study

‘You have got a foreign body in there’: renal transplantation, unexpected mild-to-moderate distress and patients’ support needs: a qualitative study

Assessment of Knowledge, Perception About Transplantation and Life Changes in Renal Transplant Patients

Implementing a tailored education programme: renal transplant recipients’ experiences

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